AmyTuteurMD

AmyTuteurMD
Bio
Dr. Amy Tuteur is an obstetrician-gynecologist. She received her undergraduate degree from Harvard College and her medical degree from Boston University School of Medicine. Dr. Tuteur is a former clinical instructor at Harvard Medical School.

DECEMBER 14, 2008 11:47AM

Raise the child you have ...

Rate: 11 Flag

My personal motto as a parent is: “Raise the child you have, not the one you wish you had.” It’s a lot easier said than done.

One of the most difficult tasks of parenting is to accept that your child is not you, or an extension of you. From the time of birth of each child, parents cherish hopes and dreams for those children: academic success, athletic prowess, fame and fortune are all possible. And what parent has not promised herself, this child will have opportunities that I did not have? Who has not wondered, is this the child who will fulfill my unfulfilled ambitions to be the scholar or the athlete that I wanted to be, but could not?

It is challenging enough for the parent of the average child to come to grips with the fact that the child is not going to be what you dreamed she would be. She is not Einstein, and he is not the next Babe Ruth. Even more challenging is accepting that the child is not you. She doesn’t share your love for hiking; he doesn’t want to be a doctor, they want to make different choices than the ones that you made (or wish you made).

How much more difficult then, to manage this task when your child is disabled in some way. Hence, there is an overwhelming desire to deny the truth of a diagnosis, or, more commonly, to refuse even to have the child evaluated for a diagnosis. Of course, no one expresses their denial in this way. Instead, they claim that they don’t want the child to be “labeled.” Or, even more fashionably, people assert that learning and psychiatric disabilities are “over diagnosed” among children.

There are a number of assumptions in these claims, assumptions that are not justified by the scientific evidence. These include assuming that a diagnosis is nothing more than the personal impressions of the professional who evaluated the child; assuming that children are routinely being diagnosed with conditions that they do not actually have; and assuming that a diagnosis is a “label” that is embarrassing, must be shunned, and can only hurt a child.

I’d like to look at these assumptions, which are not true, and offer an alternative explanation for the fear of “labeling.” The real fear is not that the child will be “labeled,” but that the parent of the child will be “labeled” as having a less than perfect child. In other words, it is nothing more than denial.

What does the diagnosis of a learning or psychiatric disability entail? Those who fear “labeling” imply or assume that the diagnosis of the disability is arbitrary; the psychologist or learning specialist meets the child and on the basis of impressions drawn from that meeting, and impressions drawn from speaking with parents and teachers, arrives at a diagnosis. The reality is that the diagnosis is usually reached by neuro-psychological testing. Neuro-psych testing is complex and comprehensive. There are a seemingly endless array of tests to diagnose every disability and every possible variation of a disability. A diagnosis is not an “impression,” it is a 15-20 page report detailing the tests and results, explaining the child’s observed difficulties by reference to the results, and detailing an intervention plan that will be geared toward the way the individual child learns.

The second assumption is that children being “over-diagnosed” with learning and psychiatric disabilities. In other words, children are routinely receiving diagnoses that are not true. Curiously, this assumption is only made in regard to children. No one claims that adults who receive a diagnosis are being “over-diagnosed.” This is supposedly a phenomenon that is restricted to children, yet no one offers an explanation as to why “over-diagnosis” is restricted to children.

Is there any scientific evidence that developmentally normal children are receiving diagnoses for disabilities that they don’t have? I couldn’t find any evidence in the psychiatric literature, but I did find copious claims within the education literature that this phenomenon is occurring. Those claims were not backed by any empirical evidence, however.

I don’t doubt that parents can shop around for professionals willing to give a diagnosis in the absence of comprehensive testing. Comprehensive testing is extremely expensive and cannot be guaranteed to give the desired result. A brief consultation with a psychologist or education specialist may do the trick in that case. Yet that is not an example of children being diagnosed with disabilities they do not have. It is an example of choosing a diagnosis in the absence of the correct evaluation.

What about “labeling”? Is there evidence that “labeling” is harmful for children? I couldn’t find any. The question doesn’t even frame the issue correctly. Children with learning and psychiatric disabilities are already labeled: as “stupid,” “difficult,” “lazy” and “troublemakers.” A diagnosis replaces the existing labels that imply that a child is responsible for his own problems, with an explanation that changes everything.

For both the teacher, and for the child himself, there is a way to understand the difficulties that does not lay blame at the feet of the child. A diagnosis turns the “stupid” child into a child with dyslexia, and opens up a whole range of strategies for coping with the problem. A diagnosis turns the “difficult” child into a child with Asperger’s syndrome, who literally does not know how to react appropriately in daily situations, and opens up a different range of strategies, not to mention generating sympathy from teachers in place of disdain.

Claims that learning and psychiatric disabilities are over-diagnosed tell us more about the parents than about the children. The reality is that all too many children with serious disabilities are not diagnosed at all, because it is too damaging to the self-esteem of parents to acknowledge that a child has a problem. They claim that they don't want their child to be labeled, but the reality is that they don't want to be labeled as the parent of a child with a disability.

There are legitimate reasons to resist a child’s diagnosis, but that calls for a second opinion, not a rejection of the diagnosis itself. Any parent resisting a diagnosis needs to be brutally honest with him or herself: Do I truly believe that my child does not have this disability, or am I afraid to bear the sadness that comes with this Am I worried that my child will be labeled, or is my child already labeled as “stupid” or “lazy” or “disruptive”?

Many of us like to pretend that the children who use to be called a little "different" when we were kids, grew up to be happy, healthy adults. That was often not the case. There are many children who experienced unfathomable misery because they could not fit in and did not understand why.

While it is possible that some conditions can be over-diagnosed, it is equally if not more likely for them to be under-diagnosed. Too many children with disabilities, children that could be helped, are going without help because their parents wish the child didn't have a disability, so they pretend that he doesn't.

Raise the child you have, not the one you wish you had. It’s not easy, but it’s what every child deserves.

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Redstocking Grandma:

"All the millions of dollars Big Pharm is spending on prime-time psychotropic drug advertised are apparently an excellent investment."

I am certainly no fan of Big Pharma, but politically correct conspiracy theories are no substitute for tallying the actual suffering and treatment of individuals. Can you actually show that anyone is deliberately misdiagnosed with anything in order to enrich anyone? I doubt it.
Amy, like I said in another comment. I agree with what you have said for the most part.

For every parent that is in denial, how many are "shopping around" for something to "treat?"

The entire situation isn't pretty, many kids that actually have these problems don't get teh help they need. Then you have teachers/parents who assume they have the right to "diagnose" a student when there MAY not even be a problem.

If parents have true concerns, by all means run with it and see what is going on, but using the facade of a "problem" to control behavoir (that the parent just don't want to deal with) is a slap in the face to those kids that have legit concerns.
>> Is there any scientific evidence that developmentally normal children are receiving diagnoses for disabilities that they don’t have?
(what the last note should have said)

"Is there any scientific evidence that developmentally normal children are receiving diagnoses for disabilities that they don’t have? "

Bullseye and right on! As is the rest of this very enlightening post, made all the more meaningful said by a physician.

I will be sending this link to other parents I know in the same boat.
Maybe I can offer a less contentious personal example. When I went away to college (as far away from my mother as I could get without leaving the continental US), my unrecognized depression careened into a major depressive episode. I became progressively dysfunctional, withdrawn and prone to sitting out on window ledges high above the courtyards considering...options.

I ended up in therapy that got paid for through my mother's insurance with her putting the money out upfront. Every discussion my mother and I had about this therapy ended up with my taking to my bed or the ledge for 3 straight days because for my mother, my being diagnosed with depression was personal. It was an affront to her mothering ability (something she really had none of, but would not or could not admit).

In those early young adult years, she twisted everything about my depression to be an indictment of her. It was like she cared little about how I functioned or fared, but was more concerned about how my diagnosis would make her look.

Over time, my depression continued despite tons of talk therapy. Though I worked out a lot of my crap, I still had mood stuff that was refractory to any supportive, cognitive/behavioral, or other psychotherapeutic approach. That was when I learned about endogenous depression. Finally during residency when I became so dysfunctional that I took to excusing myself from taking patient histories so that I could sit on the bathroom floor and cry for 45 minutes, I was guided toward a psychiatrist who added medication to my psychotherapy. Finally I felt as thought I were treading water and not just flailing to keep from drowning. I of course continued the talk therapy and have continued medication because my atypical depression seems to be problematic to manage without neurotransmitter support.

In any event, my mother before she died, finally saw my depression as being about how I was wired and not about how she raised me, though we did get to the heart of it that she had a lot of deficiencies as a parent. Yet even though she was prescribed antidepressants for her chronic medical conditions and did feel better, she was never able to accept that she was in any way depressed. She would accept any "medicalized" label over any "psychiatric" one. Guess that was how she was wired.
One of the key issues for me is that learning disabilities and psychiatric disabilities are still stigmatized. When considering that disabilities are wrongly stigmatized, we have two choices: we can work to end the stigmatization by educating people about the biologic basis for many of these disabilities, or we can attempt to "protect" our children by insisting that they should not receive the stigmatized diagnosis.

There is grief for any parent who is forced to acknowledge that a child has a problem. For example, finding out that your child is diabetic raises fears of serious health outcomes, restrictions that are difficult for a child to understand, and worry about the future. However, no one would consider challenging the diagnosis of diabetes, because we understand that is is biologically based and beyond the control of the child or parent.

Unfortunately, when a child receives a diagnosis of a serious learning or psychiatric disability, or even when parents contemplate the mere possibility that testing might reveal a disability, they fear the stigma of that diagnosis. It sometimes seems easier to deny the diagnosis than it is to fight the stigma. But learning and psychiatric disabilities are also biologically based, and the child has no more control over them than over diabetes. Refusing to acknowledge the disability, or refusing to allow the testing that might reveal the disability does not change the fact that the child is disabled. It only prevents the child from getting help.

Perhaps I don't get around enough, but I have never heard of a child diagnosed with dyslexia who grows up to insist that he doesn't have dyslexia. I have not heard of a child with Asperger's Syndrome who grows up to insist that his childhood would have been a lot easier had he not been diagnosed. The fears of over-diagnosis are parental fears, not fears of the individuals who have the disabilities.
teendoc:

"In any event, my mother before she died, finally saw my depression as being about how I was wired and not about how she raised me,"

This is exactly what I mean. It is fortunate for both of you that she could ultimately accept the reality that it was not about her, but I suspect that does not make up for the years of suffering that you had to endure before getting a diagnosis and treatment.
Stellaa:

"but is there any human trait, or characteristic that cannot be "diagnosed" and categorized into some kind of ailment?"

Bingo! In the words of my psych professor: "everyone habors an inbalance in some form, it doesn't mean something everyone has a problem"
"One of the key issues for me is that learning disabilities and psychiatric disabilities are still stigmatized."

And that is a HUGE part of the problem, for adults and childern alike.
Lady Miko:

"In the words of my psych professor: "everyone habors an inbalance in some form, it doesn't mean something everyone has a problem"

But that tells us nothing about whether we should believe that people are receiving diagnoses for disabilities that they do not have. I'm referring to a diagnosis based on neuro-psych testing. Is there any evidence that the results of such testing is wrong?
Amy:

Good point.

No doubt that mis-diagnosis does happen but I would hope that is an uncommon thing. I don't see testing as a bad thing, it isn't.

I wonder why some parents see that as such a threat?
You're right...everyone deserves to be who they are; not who others see them to be! It is one of the most basic of human rights!
Being a parent myself, I have learned this very valuable lesson.

I make a point each and every day, to give importance to my daughter's decisions, ideas, ideals and viewpoint on life.
These views are her views, and she has every right to experience them without the qualification of these being superimposed by another's view!
(thank you for your post)
In my sister's class in school there was a boy who I strongly suspect has Aspereger's. He was asocial, in AP classes, and he didn't even get teased because he was oblivious to teasing. I suspect today, he'd have been diagnosed with Aspereger's and probably received some sort of intervention.

I have always was he better off for being odd, but assumed to be normal? Or do the interventions and labeling result in a better life for the so labeled and intervened with?
Malusinka:

"Or do the interventions and labeling result in a better life for the so labeled and intervened with?"

Many children with Asperger's become depressed as teenagers and young adults because they begin to crave friendships and romantic relationships, but they don't have any idea how to go about making a friend. There are now many books, and other resources available for "learning" what came effortlessly to other children. This knowledge can make a tremendous difference in happiness and self-esteem for people with Asperger's Syndrome.
Thanks, Amy, for your sanity and your science. I developed an obsessive interest in this subject last year as a journalist, and the mother of diagnosed son.

I've become increasingly skeptical of the diagnostic ratio between boys and girls, and increasingly impressed with evidence that suggests that girls are seriously underdiagnosed for LDs and milder forms of autism.

I don't blame mothers for this. But I am going to suggest that there are mothers who internalized a lot of labels growing up, loser, underachiever, freak, etc. So they have a problem with labels, and a problem seeing themselves as strong and socially competent enough to negotiate for the kind of help their daughters need to have a better educational experience than they did.

Believe me, however, the world is not full of pushy teachers and doctors hungering for more kids to diagnose. It is far more full of teachers and doctors overwhelmed already with the responsibilities of taking care of already diagnosed and average kids, who are demanding to begin with.

Fortunately the world is also full of well meaning teachers and doctors who are happy to accommodate and help as many kids as they can....But they need a diagnosis to do that.
Juliet Waters:

"Believe me, however, the world is not full of pushy teachers and doctors hungering for more kids to diagnose."

You're right. Unfortunately, a teacher is more likely to complain that a child is lazy or difficult than to suggest that there is an underlying diagnosis. Parents often initiate evaluation because they are convinced that their apparently bright child is neither lazy nor difficult, but simply struggling with things that are much harder than they ought to be.

The diagnosis can be a relief in some ways. It offers an explanation, and opens up avenues for treatment and learning coping strategies.
I think there are two issues being discussed here: diagnosing learning disabilities, which can often be managed with modifications to the learning environment, and diagnosing medical issues which may require medication. I can understand why there might be a potential for gain for Big Pharma in overdiagnosing children as having ADHD in the hopes of generating higher sales of Ritalin, but what would be gained by wrongly diagnosing a learning disabled child? Learning disabled children cost school districts much more money per pupil than regular Ed students, and the initial cost of evaluation, which is paid for by the school, is quite pricey. No school would likely overdiagnose children as being learning disabled, knowing that such diagnoses would cost them more money. Parents should realize that if their child's school suggests testing, it means that there really is a problem that needs to be addressed.

This was a timely post for me as I just attended a meeting for the three-year re-evaluation of my learning disabled child. I'm one parent who is glad to have the diagnosis and the protection and modifications that it provides within the education system.
Amy:

"One of the key issues for me is that learning disabilities and psychiatric disabilities are still stigmatized. When considering that disabilities are wrongly stigmatized, we have two choices: we can work to end the stigmatization by educating people about the biologic basis for many of these disabilities, or we can attempt to 'protect' our children by insisting that they should not receive the stigmatized diagnosis."

Yes, spot on! The resistance to "labeling" children seems to me a misguided form of protection that serves only to reinforce the stigma.

When I recently told an acquaintance about my son's diagnosis of PDD-NOS, her reaction was: "Too bad they always want to put labels on kids." I think it was her way of trying to comfort me (which, frankly, I didn't really need); as if it would help to put the "blame" on the doctors rather than on the cold, hard fact of biology.

My response was to tell her I felt the "label" (diagnosis) was value-neutral, and meant nothing except that we now had a slightly better roadmap for helping him negotiate a world that was a round hole that was not going to change to fit my square peg kid.
I suspect there are some people in the "over-diagnosis" camp who feel that diagnoses of learning or psychiatric disorders are a way lazy parents and complicit educators and doctors try to excuse a child's rotten behavior.

Because learning disorders and the developmental disorders are not generally obvious to the casual observer in the way things like Down's Syndrome are, it is easy to dismiss them as simple behavior problems. This serves to add yet another layer to the stigma; that it is simply a failure of parenting.
As a result of shuffling through the medical community and receiving many misdiagnoses, I have mixed feelings about this post. First of all, biologically, I have an autoimmune disease, Behcet's Syndrome, which took a LOT of doctors and doctor visits, some of which resulted from me storming into offices when I was terribly ill and on the verge of starvation because eating was so painful and I wanted the doctors to see me then, not when it was convenient for them. I had to be beyond proactive to get proper care. I wrote letters to doctors at Johns Hopkins and Mayo who I found through research begging for help and received only one reply. I spent hours upon hours studying complicated medical journals in an effort to find out what was wrong with me. Two years of struggle, multiple punch biopsies of mouth sores and skin lesions, blood tests until I had no veins to draw from, and misdiagnoses from many, many doctors, usually of herpes later, I found an Indian rheumatologist who took one look at me and declared Behcet's. Ten years later and I have yet to find a medication that my body will tolerate and is effective. I thought I had finally found it with low dose antibiotic therapy but, after initial success and much happiness on my part, it seems to have stopped working. The whole experience has been maddening and has changed my entire life and the things I can do. And I often wonder what someone with less resolve and intelligence would do when faced with the same situation.

Next is the psychiatric version and my son. My mother's side of the family has a lot of mental illness, suicide, alcoholism, depression, the works, so I knew what I was dealing with in a way. I have clinical depression and anxiety and didn't have to go through the 25+ medications I have for my Behcet's to get help. My son is a different matter. I could tell he was suffering from serious depression but there was something else. In an effort to find a proper diagnosis, I have taken him to countless psychiatrists and psychologists and been told everything from ADHD to to bipolar disorder to schizophrenia, all of which were thrown out there after 30 minutes or less. The child has many lows, very few highs. He is extremely sensitive and melts down easily. We still don't have a diagnosis other than "mood disorder" and, although we have had some success in the medication department, a combo of Lexapro, 10 mg, and Abilify, 5 mg, he is still not the son I had before he became so sad so much of the time. And we paid out the nose for the twenty some page analysis, $1000 out of pocket.

So I guess what I am saying is, although I have no convincing argument about over diagnosis, I do about misdiagnoses. Many doctors are not willing or are unable to take the time and research to properly diagnosis and treat a rare or difficult illness. My rheumatologist is a good one but has nothing else to try on me and our psychiatrist handles me fine but is not willing to gamble on any other drug combo for my son since we found something that is somewhat though not completely successful. Your argument has flaws, assumes that parents are not willing to accept labels for their children. I just want a healthy me and a healthy son. Call us what you want. Just fix us.